Archive for August, 2012

She explains, “When you hear hoofbeats, you think horses. Maybe you should think zebras.”

In other words, when confronted with symptoms that include extreme fatigue, fainting and shortness of breath, most physicians think “heart disease” or COPD. But maybe – in some cases, at any rate – they should be thinking “Pulmonary Hypertension.”

“That’s our campaign – to try to get doctors to think “zebras”.”

Pulmonary Hypertension, or PH, is described as a “rare and incurable disease,” which results in the arteries of the lungs becoming scarred, hardened and blocked. It is a progressive disease, often fatal, with only a handful of treatments available to halt the loss of lung function.

The final treatment is a lung transplant – though not all suffers are eligible for transplantation.

Part of the problem has been that PH is often diagnosed late: its suite of symptoms are all too often confused with other more common conditions.

“They often diagnose it as COPD. They often diagnose it as asthma,” says Dolan. In her daughter Emily’s case, fainting spells were initially thought to be related to a heart condition – but heart monitors failed to detect any problem.

Now, 15 years after her diagnosis, Emily’s condition has responded to medical treatment. She is working as a Social Worker in Newmarket, and studying for her Masters degree – but still makes frequent visits to the doctor, to monitor the progress of the disease. She is also a candidate for a lung transplant, although that is some point in the future.

As a result of their daughter’s struggle, Ruth and husband Ed have become involved in the Pulmonary Hypertension Association of Canada – and on Saturday, August 25, held a fund-raising and awareness-raising yard sale at their Bradford home.

The money was secondary to the goal of making people more aware of the disease – which, thanks to the efforts of PHA and increasing understanding among physicians, is now considered “uncommon,” rather than “rare.”

Ruth would like to use the funds raised to start a local PHA group in Simcoe County. Right now, PH patients as far away as London, Pickering, Bradford and Barrie are all part of the Toronto Chapter, and meet in Toronto.

The group provides tremendous support and resources to those with PH. “It’s a really scary time, when you get diagnosed,” says Ruth; her daughter was initially told she had only a year and a half to live.

But through medical treatment, and international conventions that bring together patients, caregivers and physicians from around the world, understanding is growing, and patients learn they don’t have to face the unknown alone.

The conventions, she says, are “really quite a unique way that the PH community is coming together.”

A lot has changed in the last 15 to 20 years, including advances in research – but unfortunately, says Ruth, the length of time between the onset of symptoms and diagnoses “hasn’t changed.”

There is a need for more doctors to think “zebras.”

For more information, see www.phatoronto.ca or check out the video on You Tube, “Let Me Breathe.” For information on the Toronto Chapter of the Pulmonary Hypertension Association of Canada or to express interest in a Simcoe County Chapter, contact ruth@phatoronto.ca